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Toddler diagnosed with leukaemia now cancer-free thanks to transplant from umbilical cord

The only option to kill the disease was a stem cell match

Friday 23 February 2024 16:46 GMT
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Oti is now cancer-free and has had his Hickman line removed (Collect/PA Real Life)
Oti is now cancer-free and has had his Hickman line removed (Collect/PA Real Life) (PA)

A toddler in Essex who was diagnosed with fast-spreading leukaemia is now cancer-free thanks to stem cells from an umbilical cord from the US, while a subsequent donation drive by his grateful mother has resulted in one of her friends being called up as a match for someone else in need.

Jo Hughes, 35, a former project manager, says she is forever grateful to the anonymous donor who saved her son after he was diagnosed with acute myeloid leukaemia in July 2022.

Oti, who will be three in March, is now eight months clear of cancer thanks to stem cells from an umbilical cord which lay on ice for 12 years before it was discovered as a match.

Jo set up a donation drive in September 2023 for friends and family to sign up to the DKMS global registry and a friend has now been called up as a match for someone else in need of a stem cell transplant.

Jo first noticed something was wrong with her son in July 2022 when he was 16 months old and “didn’t want to use his arm at all”.

Jo, who lives in Saffron Walden with her husband Terry, an accountant, and their two sons, Remy, four, and Oti, two, told PA Real Life: “He was too young to tell me he was hurting. He could communicate with me but he couldn’t explain anything, so we went to hospital.”

There were no signs of bruising or any lumps and bumps but after having blood tests, it was revealed that Oti had acute myeloid leukaemia, an aggressive cancer of the myeloid cells.

Jo said: “I didn’t expect it because that word hadn’t entered my head.

“It all happens very quickly so the shock is that you’re told he has leukaemia and then within 10 minutes he had a cannula in and plasma being put in.

“The next morning, he had surgery to get his Hickman line put in and then chemo started the day after.

Oti was saved by stem cells from an umbilical cord from the US which had been on ice for 12 years (Collect/PA Real Life) (PA)

“Any idiot can survive a crisis, it’s the day-to-day stuff that wears you down, you go into survival mode and you just get on with it.

“Oti was very lucky in that he responded to chemo very well and coped well. We were the lucky unlucky ones.”

Jo recalls not having time to process the shock of her son’s diagnosis during six months of chemotherapy as Jo and Terry took turns living at Addenbrooke’s Hospital where Oti stayed as an inpatient.

He went into remission in December 2022 but the cancer, which Jo described as “horribly aggressive”, returned in July 2023.

The only option to kill the disease was a stem cell match.

Jo added: “Parents aren’t expected to be matches but siblings are more likely so Remy was tested but he was not a match. Then it was a case of joining the register and waiting for a match.”

Oti’s lifesaving stem cell donation ended up coming from an anonymous umbilical cord donor in the US.

Jo said: “Because the umbilical cord registry works slightly differently, we’ll never know who the donor was. It’s incredibly magic that there’s a woman out there who doesn’t know that she saved my son’s life.”

After the transplant, Jo said they went “day-by-day” until, two weeks after the procedure, they found out it had been a success.

Oti spent 48 days in isolation after his transplant to allow his immune system to strengthen.

Afterwards, Jo felt compelled to help others and, in September 2023, she worked with DKMS to organise a registration drive to encourage more people to sign up to the registry.

According to the charity, there is a one in 800 chance that someone will be called to donate, so Jo was stunned to discover that a friend who had attended her drive had been approved as a match three months later.

Another friend had signed up beforehand and was also called up to donate stem cells.

Jo said: “Now when we see each other, there’s just this crazy bond which is pure magic. Because the stem cell registry is different to the umbilical cord one, he will be able to be in touch with the recipient after two years.

“You have parents that are on their knees because they cannot save their children and these people do it for you. They’re real-life superheroes.”

While Oti will need to wait until he is in remission for two years before getting the official all-clear, Jo said the riskiest time for relapse is in the first six months.

Oti has now been in remission for eight months and this week he had his Hickman line removed.

Jo said: “He’s honestly thriving. I now could not tell the difference between him and his brother health-wise.

“I remember friends and family offering help and support while he was going through treatment, offering to bring toys and food to the hospital, but I didn’t really want anything apart from them to turn up to the donation drive, which they did.

“It’s genuinely incredible, just a chain of people helping people across the world anonymously.”

To sign up to the DKMS donor register, visit: www.dkms.org.uk/register-now.

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